About us


The founding members of DSEF:

  • Alliance Syndrome de Dravet (France)
  • Dravet Syndrome e.V. (Germany)
  • Dravet Italia Onlus and Gruppo Famiglie Dravet Onlus (both from Italy)
  • Stichting Dravetsyndroom Nederland/Vlaanderen (Netherlands)
  • Asociatia pentru Dravet si alte Epilepsii Rare (Romania)
  • Dravet Syndrome Foundation – Delegation en Espana (Spain)
  • Swiss Dravet Syndrome Association (Switzerland).

Meet the Board

  • Julian Isla, chairman
  • Isabella Brambilla, deputy chairman
  • Adelaide Maillard, secretary
  • Simona Borroni, treasurer

How can you join us?

Any association or foundation in Europe whose main purpose is ‘fighting against Dravet Syndrome’ is welcome to join us. There are two important conditions: the organization applying for membership:

  • must be formally organized with written Statutes which do not conflict with those of the DSEF;
  • must agree to fulfill all obligations of a member as stated in the statutes and in the rules of procedures of DSEF, as approved by the Ordinary General Meeting.
  1. Please send a letter of motivation to the board by e-mail, together with:
  • a copy of the Statutes of your organization;
  • the establishment of the office (founding document) and the address of the organization;
  • a report of the Board of Directors, signed by a responsible officer, showing that members apply for a membership in the DSEF;
  • profession, postal/mail/contact information of the person who will represent the organization in the DSEF.

2. The Board of Directors of the DSEF considers the application for membership during its next meeting.

3. The Board has the right to refuse the application without having to justify its decision. When an application is accepted, the secretary of the Board will confirm membership by e-mail.

What do we expect from our members?

  • All members comply with the Statutes and Rules of Procedure of the DSEF.
  • Each year, members pay a subscription fee, established by the Ordinary General Assembly.
  • Members shall be represented by their chairman or by a person chosen by the chairman which has been communicated in writing to DSEF. All members shall keep the DSEF informed about any change of legal representative in writing.
  • The language in which we communicate is English.
  • Members who are up to date with their subscriptions are entitled to vote at general meetings and to access to the Board of Directors.

To make your application, you can use this form.

More information?

We will be delighted to give you more information about DSEF, our projects and a list of our members. The Statutes and Rules of Procedure of the DSEF can be sent to you at your request. Please contact us at info@dravet.eu.